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Who cares for the carers?

Posted May 31, 2012

A few years back, the television programme, This Morning, ran a campaign highlighting women who were full time carers. As part of the campaign they arranged for some of the women to experience a day of pampering. It was a disaster.

The women looked uncomfortable; they said they felt guilty that they were being singled out for special treatment rather than the people they cared for. The programme was well intentioned and all the women they featured certainly deserved a break. But you could see that they just couldn’t switch off and lap up the experience. This really struck a chord with me.

There are two full time carers in my family – my sister and my mother. I have witnessed them cope with the impact of sleep deprivation, constant anxiety and the sheer physical demands of lifting and moving someone heavier than themselves.

My sister’s teenage son has severe learning disabilities. At present he attends a special needs school but this is due to finish next year. There is nothing available to him as a follow on to his schooling. As a result, he will spend every day at home with my sister. My sister is concerned that he will not be stimulated in the way he is now through regular interaction with his peer group. She fears that his social skills will suffer as a result. I fear that my sister will become isolated from her own support network of friends - she needs stimulation too.

My sister values the respite help she currently receives for her disabled son as she believes it is essential to her and her family’s wellbeing. But finding the type of respite care that best matches her son’s needs (somewhere close to home that can provide one on one supervision) is increasingly difficult.

My mother, on the other hand, refuses any assistance. Even though she’s exhausted she will not leave my father, whose mobility is impaired because of a stroke, in someone else’s care. My mother has seen her plans for a carefree and self-fulfilling retirement evaporate. It’s over ten years since my sister assumed responsibility as the main carer for her son and she’s feeling as if life is slipping by her.

A lot is said about carers – how selfless, compassionate and brave they are. Of course they are all these things. But they aren’t angels. They have their down days like everyone else. Occasionally they feel imprisoned by their situation. And yet I’ve never heard my sister grumble about her role as a carer; like my mum, she just gets on with it.

So what keeps them going? The answer is love – they both draw on a huge, seemingly bottomless well of love. But isn’t there a danger that if we keep demanding more and more of them that this well might eventually run dry?

In the light of government cutbacks, with even more responsibility being foisted upon carers, I worry about the long term consequences.